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Just diagnosed after being sick for years!

Location
NC USA
Hi,

Thanks for letting me join your forum. I will be 50 this October, and have been out of work for the last nine months. Already knew I had high blood pressure, hypothyroidism, localized osteoarthritis, hypogonadism, and a very touchy stomach. Around the beginning of 2012, I started taking all my vacation and sick time, too tired to even get out of bed a lot of the time. Did not wish to eat as much, normal stomach issues for me. I have never felt this worn down in my life. Tons of blood work done, cardiolite stress test for cardio function, left ventrical output was 54. Next sent to endo. I was checked for morning cortisol levels, they were low, so I had a cortosyn stimulation test to see if my adrenals were working normally. I was told my adrenal glands were weak, put on 5 mg of Prednisone per day, then it was changed to 30 mg of hydrocortisone per day. About 3 months into this I was sent to a GI dr for a colonoscopy. Some polyups were removed, along with some tissue samples. No cancer found. No signs of active crohns, drinking the gallon of prep, I think called Go Lightly, was not fun. At 5am I was passing blood and mucous. Months later, I am no better, so I ask my GP, "Would all the hydrocortisone I was on at the time of the colonoscopy masked Crohn's? I quit taking all of that hydrocortisone 2 months ago after a specialist told me there was no way I had Addisons or Adrenal Insuff. The end of the long story, my GP said there were reliable bloodtests we could do to check for Crohns and since my sister has it for sure, we should check. When the tests came back, she said with all my symptoms, and the test results, she was sure I had it. She wrote a script for 5mg of Pred. for 2 weeks, then dosed down to 2.5mg per day. I also an supposed to drink something called Prevalite powder once a day. My questions, can 2.5mg of Prednisone make a 6'3" 250lb man feel emotional? Do I need to take it every day? It almost seems like my gut hurts more now, that I do not have the runs every day. Could anyone give me a link to a few websites that will show me foods that are safe to eat. I cannot eat or drink any milk products or corn. Thanks for your help.
 
Hi Ratdog, welcome to the forum :)

Sorry you're been having it rough, all that testing must make you weary. This forum will give you everything you need to know about diet etc, have a look at the diet and fitness subforum where you will get lots of info and if you have a go with the search at the top and look up low residue diet it will give you a fact sheet and links to other threads about diet. Basically low residue diet means avoiding foods that are high fibre, fatty, nuts, seeds, spicy, fruit and veg with skins on, carbonated drinks and caffeine. It's all trial and error but it's worth having a go. You mentioned you had trouble with milk and corn, a lot of people can be allergic to lactose found in dairy products and corn and corn products are very difficult for us to digest and do cause problems. Oh I do miss my corn on the cob :(.

I hope this helps for now, please feel free to ask any questions and once again welcome to the forum. :ghug:
 
Look up the "low residue diet" on this forum. Under Meds and diet questions on forum page.
Alot of people also use the "SCD diet" which you can just type into your search engine or "Paleo diet". Hope this helps out. When I am in a flare up, for me rice and boiled chicken works great. Cooked veggies but not cruciferous veg. or gassy ones like beans. Unspicy foods are best. I eat chili one time and I am in big trouble for days!Your body tells you what not to eat. If somethings causes you trouble, avoid it. Red sauce causes me alot of trouble too.
 
Location
NC USA
Thanks everyone for all your input so far. I had a small bowl of white rice and a little applesauce for supper, with watered down tea. I really like almond milk, always have, it comes in chocolate too, wonder if almond milk is safe for us to drink? Am I the only person that has a problem with such a small dose of 2.5mg of Prednisone making you emotional. Also, with the Prevalite and Pednisone making my stomach settle some, why does it hurt more now? I want to give my dr a chance, thanks
 
Just a quickie, but spicy foods are rough, but fruits and vegetables really tear me up. Having a J- pouch instead of colon(removed 1995), I'm probably a tad more sensitive as far F&V's are concerned. But my Crohns, now very active has pushed me to a new level of tolerance which I hope I can maintain.
 
The prednisone can be responsible for making us very emotional and moody, my Rheumatologist suggested that I wasn't feeling my joint pains because I might have a feeling of euphoria from the prednisolone I had been taking, I personally don't recall feeling euphoric though and didn't notice any mood swings but I should probably ask my family about that one lol. It might be worth having a look at the prednisone sub-forum, below is a link, you might find similar threads there. http://www.crohnsforum.com/forumdisplay.php?f=80

My tummy seems to hurt more since I've been diagnosed and I don't quite understand why, I wonder if it has anything to do with having colonoscopy prep as I've read that can upset things or is it just that I'm aware of the symptoms now and therefore realize they were always there but didn't recognize them before?? Not really sure, it's a conundrum.
 
ratdog - I drink almond milk and it seems to be tolerated just fine. I switched to it from soy milk because the soy was giving me problems. I can also drink coconut milk with no problems. I'm not sure about the chocolate - if it has cocoa in it, the caffeine in that might be a problem, it is for some. Have you tried kefir milk? It's lactose free, no casein and has good probiotics. Very helpful for the belly.
I have heard other people say that Prednisone makes them emotional. Honestly, just the belly issues make me emotional without any meds!
 
Location
NC USA
What a great and friendly forum! Thanks again to those of you that read and responded to my post. When I was given 14 days of Prednisone, I was a little hyper, had more energy, joint pain was cut in half, and stomach started to settle a little. My dr cut me back on day 15 to 2.5 mg of Pred. Seems that's when the emotional curse cut in. Most guys do not cry in public, but I have no control of when I do now. The only almond milk I liked was chocolate, and it made my gut hurt if I drank a lot of it. Bloating and pain is really bad. Anyone juice carrots or beets? I know that would still be raw, but the fiber would be gone.
 
Have you tried the vanilla almond milk? It's not bad either. Otherwise, there are flavor syrups you can buy, and "chocolate" flavorings you can buy that don't contain cocoa. There are some good chocolate chunks I've bought to add to gluten-free cookies, that melt nicely, and I think you could probably put them in warm almond milk to make hot chocolate that wouldn't hurt the belly. I've not tried juicing myself (other than oj, which I tolerate fine), but others have had good success with it.
 

scottsma

Well-known member
Location
Tynemouth,
What a great and friendly forum! Thanks again to those of you that read and responded to my post. When I was given 14 days of Prednisone, I was a little hyper, had more energy, joint pain was cut in half, and stomach started to settle a little. My dr cut me back on day 15 to 2.5 mg of Pred. Seems that's when the emotional curse cut in. Most guys do not cry in public, but I have no control of when I do now. The only almond milk I liked was chocolate, and it made my gut hurt if I drank a lot of it. Bloating and pain is really bad. Anyone juice carrots or beets? I know that would still be raw, but the fiber would be gone.
I'm a juicer,and you're right that it solves the fibre problem.What you do get is vital nutrients,vitamins and enzymes.My basic is carrots and apple and beets,but I do experiment.Start off small and see how you go.Green juice is exceptionally good,but I sometimes get mild cramping,so like I said take your time and see what you can tolerate.You might be surprised,and at least you will know you are getting lots of essential goodness.Best wishes :smile:
 

scottsma

Well-known member
Location
Tynemouth,
So what do we know about drinking alcohol? Beer and wine. Good? Bad?

And what about coffee? Any issues with that?

Jim
Same old, same old, everyones different.If you think it makes you sick you have to decide if it's worth it.Lots of us can tolerate booze and coffee,but lots of us can't unfortunately.Everything in moderation (if you can):lol2:
 
I was speaking more about whether its good or bad or niether for the conditions of crohns in general. Not so much about whether it settles well with us. But thank you!
 
Location
NC USA
I have never been a big drinker, but wine would be my choice. All of it hurts my gut as soon as it hits it. Funny, when I was younger, weed never hurt my stomach,lol I think it helped it. I am going to juice some beets and carrots today. Then, the question will be, do I spend my night in the bathroom, or in bed. I doubled my Pred. dose this morning, sorry to be graphic, but it looks as if I am passing the lining of my gut when I go now.
 
There are several posts here in the forum by people supporting the use of medical marijuana for Crohn's symptoms.
Good luck with the juicing, I hope it goes well for you!
 
Location
NC USA
I ate boiled chicken, white rice, and applesauce today. I juiced a few carrots, they tasted good. Then a few beets, that was the first and last time for that, the beets tasted like dirt. I must say, so far today, my gut feels 50% better. Sorry if my "weed" comment offended anyone, it was all in fun. Looks like it ran everyone off. That is one strange subject for lots of people, booze kills many people used the wrong way, but all I ever did bad after partying with friends was eat too many Snickers bars. (Bet those peanuts in the Snickers sent me into a flare)
 
I'm so glad you tried the chicken and rice today! I think it is the best choice and you can season it to taste good. I always do. Medical marijuana is a personal choice and noone on here seems to judge anyone for using it. I chose to quit because my children had severe addiction problems with illegal drugs for yrs. I did not want them calling me a hypocrite or using me as an excuse to use their drugs. It is a fine line when you have children to deal with. Do what works best for you presonally because everyone is different. Good luck and God bless!:ghug:
 
Chicken and rice is definitely my favorite go-to meal. It can really taste good with the right seasonings and some coconut oil! Applesauce does me well too. I like to mix with some homemade yogurt and some apple pie spice - yummy.


I don't think anyone was offended by the weed comment. It certainly is a personal choice to use and I don't think it is detrimental to the majority of those who use it, even for recreational purposes. It has been shown to have some very positive effects when used medicinally. Except when it causes Snickers cravings! :D
 
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